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10/26/2011 02:51 AM

IT'S PERSONAL.... but I don't know what to do

Posts: 2673
Group Leader

You all know the fiasco that went on at the LLMD's office Monday, regarding the whole MRI screw up. Well, my LLMD got the MRI, reviewed it & called me today. The news I got, honestly, put me over the edge.

This is not LD & Co related but I have to get it off my chest or I'll lose it, for sure!!!

I have had sever endocrine issues that have gone un-DX for the past 8 yrs. We were finally able to narrow it down to Hypopituitarism w/ secondary, central hypothyroidism.(I realize this is like a foreign language to most of you, sorry) So, we needed to figure out what hormone disorder was causing it.

When my LLMD saw the MRI, she knew right away what it was... MEN1.

Long story short: In order for a person to have MEN1, 1 or both of the parents have to have the disorder. It will manifest as Tubular Sclerosis in the 1st. decade of life. IE: My 8 yr. old son because of me.

Or it will manifest in the 3rd/4th decade in life as regular MEN1. IE: Myself.

Okay, here's the kicker, neither of my parents or any of my grandparents have ever had Tubular Sclerosis or MEN1. My LLMD said, "What do you mean there's no history & no one has ever had any issues? They've had too. How else would you have gotten it?"

Then she stop & said, "Oh, ummm.... nevermind". I asked her, "What?" & she said, "It doesn't matter who has it or doesn't have it, you do & we need to deal with it, Okay"

I got off the phone with her & I was racking my brain (hard to do with brain fog, I know) trying to figure out why my son & I have this but no one else in my entire family (both sides) didn't.

Maybe it was the brain fog, maybe I'm just a little slow or maybe I just didn't want to even think about it the time....

If my Mother does not have MEN1, then my Dad has to have it. Since my Dad doesn't have it, then guess what.... HE'S NOT MY REAL FATHER!!! Might explain my LLMD's dramatic pause & dropping the subject like she did. (ya think?)

I'm 42 yrs. old & I'm dealing with the fact that most likely my Father is not my Father... NOW?!? I guess it's like they say, "The truth always comes out in the end."

I have no idea how to even deal with this issue nor do I need the stress &/or drama. Do I just not say anything & let it go or do I confront my Mother?

For all I know, if my father really isn't my father, he might not even know. The man is 78 yrs. old. Do I really want to open this can of worms on him if he's just as clueless as I was?

I really need to get some sleep!!!


10/26/2011 03:00 AM
shorelinelymePosts: 1252
Senior Member


I found this info. on tubular sclerosis:

Is TSC inherited?

Although some individuals inherit the disorder from a parent with TSC, most cases occur as sporadic cases due to new, spontaneous mutations in TSC1 or TSC2. In this situation, neither parent has the disorder or the faulty gene(s). Instead, a faulty gene first occurs in the affected individual.

I'll post the link later.

Have to get ready for work.



10/26/2011 03:12 AM
Posts: 2673
Group Leader

I have MEN1 (Multiple Endocrine neoplasia) which is inherited by at least one parent. My son has Tubular Sclerosis. Seeing as I have MEN1, we now know how he got it.

I know all about TS & how I person can get it or not get it. The Drs. couldn't figure it out because neither my DH or I had it & no family history on either side. So, we figured it was just spontaneous.

Shore - I hope I don't come off as not being grateful because I am. I know you're just trying to help but that base has already been covered. Thanks for caring enough to try & get me some info... even if I already knew it. You Rock!!!

10/26/2011 03:24 AM
Posts: 32201
VIP Member
I'm an Advocate

raven, hugs to you on your newest shocking news!

just a brief part of info at above; more at site!

Gene Testing

Gene testing can identify whether a person is a carrier of the MEN1 mutation. Once identified, carriers undergo approximately yearly testing, a process called screening, for biochemical indications of a developing tumor.

Relatives who are found to lack the known MEN1 mutation in their family can be freed from screening for MEN1. A limited number of laboratories in the United States offer MEN1 gene testing to locate and identify MEN1 mutations.

The gene tests are expensive and can be time-consuming. Once a specific mutation is found in an individual, the gene test for relatives is easier and less expensive.

In 10 to 30 percent of families with MEN1, no mutation is found.5

However, an undetected MEN1 mutation may still be likely.

Sometimes a person with MEN1 knows of no other case of MEN1 among relatives.

The most common explanation is that knowledge of the family's health history is incomplete. Less often, the person carries a new MEN1 gene mutation.

Gene testing may be offered to people who

•meet the clinical criteria for MEN1 by having at least two of the following:

enlarged parathyroid glands, a pancreatic or duodenal endocrine tumor, or a pituitary tumor

•don't meet the clinical criteria but are suspected of having MEN1-for example, those who have multiple parathyroid tumors before age 30

•are first-degree relatives of people with MEN1-children, brothers, or sisters- giving them a 50 percent chance of having inherited the mutation

The Role of Genetic Counseling

my gut feeling when reading the beginning of your post was the same conclusion you came up with until i read the above and jackie's explanation.

hope the above article may help you; from NIH's medical library.


10/26/2011 03:27 AM
Posts: 162

Of corse you know, dear Raven....we know how you research things! I actually have a friend I few up with that spent the first 18 years of his life visiting a father that wasn't his (biologically). This kind of thing can really screw a person up! My opinion is that you need to know the truth...'s way past time you knew the truth!

I know people say us lymie's are overly-sensitive, blah, blah....but this is something that makes up who you are.

We live in a very different time than our parents did. These sorts of things used to be routinely swept under the rug. You tripped on the dirt-pile (as that happens with too much floor-sweeping). You are not wrong for feeling the way you do and you DESERVE an answer!

This doesn't merely affect you!!

A simple blood test for your parents (or proof of their blood-typing) would be a good place to start. No offense, but if it were me and I had been lied to my whole life, someone's 'word' on the matter wouldn't do a damn thing for me.

We are your family too, lovely soul, we are behind you in whatever it is that comes out nowSmile our arms offer a warm and supportive embraceSmile


Post edited by: PosionIvy, at: 10/26/2011 03:31 AM

10/26/2011 04:12 AM
Posts: 2673
Group Leader

Thanks Betty - Thank You.... I read what you posted but I wish it would/could give me more comfort.

I have this & I passed TS (among other things) to my son. My DD isn't effected but she could have what I have & not develop it until she's in her 30's-40's.

Either way, it is obviously "DOMINATE". So, I don't understand how not "ONE" person (parents, grandparents, siblings, aunts, uncles, cousins, nieces & nephews) & I have such a strong case of it.

Also, looking back now, there are things that were never said to me. Like why my parents got divorced right after I was born, only to remarry when I was 5. Why every one in my family is 5'10" or taller & I'm only 5'3". Everyone has brown eyes & I have green.

The fact that my older sister would always say, "You're not one of us, you're adopted". Why I always felt like my dad was ashamed of me & I was never good enough for him. Not to mention, I don't ever remember him saying "I Love You".

Honestly, if this is the case, it makes perfect sense to me now.

Ivy - You're always there for me.... Thank you!!! You're right, I know what I need to do. I just have to do it!!! Maybe I can just confront my Mother & leave my Father out of it, for now anyways.

It is what it is, there's nothing I can do about it right now.

10/26/2011 05:36 AM
Posts: 1822
Senior Member

Hi Raven-

I'm sorry for your situation...this is a hard one..

I think you are right in not including your father at this point, he may or may not know..and it would bring out hurt that would be hard to take back.

I know you and your mom have your differences, and she has a lot of your symptoms...are you sure she isn't the source of this? If she never gets tested for things, or is stubborn about that, maybe it was overlooked?

Raven, my heart goes out to you, this is no way to find out this kind of all ways, this is not an easy thing to deal with.

If you decide to confront your mother, could you try and be as gentle as you can with her? This will bring back so many old wounds for her if this is indeed the case..

I know you are confused, angry, in shock, and a million other emotions right now..and I'm so sorry..

The only good thing right now is that you know exactly what is causing this for you..try and concentrate on that part, and take care of yourself first..things have a way of working themselves out when we take care of ourselves first and foremost.

You're in my thoughts and prayers Raven..I pray you are comforted and guided in the right direction to take.

God bless..

peace love and light-kim

10/26/2011 06:28 AM
Posts: 381

I might have missed it... but are they absolutely positive you carry that gene? Or is it a guess?

Im pretty sure Im stating the obvious, but most with Lyme have severe endocrine issues... is it not possible that whats going on is just mimicking this?

10/26/2011 11:14 AM
Posts: 2673
Group Leader

MEN1 is an auto-immune disorder which I have & has been unDX for over 2 years. The reg. Drs. couldn't figure it out so they just gave up. Oh well, right?

LD & Co. does not cause this & yes, due to certain blood results, weight issues, my son having TS & a few unrelated issues LD & Co. issues (esp. facial muscle atrophy) it's pretty much a slam dunk on this one.

I guess it was never considered because there was no family history. If there had been, I would have know from the beginning what was going on.

This also my explain why I developed several forms of Mycoplasma & HHV-6. If not treated, over time the immune system weakens making it easier to develop systemic infection.

Like I said, IT IS WHAT IT IS & like my LLMD said, "Regardless of who I got it from, I have it & need to DEAL with it.

Honestly. I thought it was just me being paranoid but my DH also agrees with me on this one. Normally, he'd be like, "Dina, you don't know that! You're just over reacting. Wait until you get all the facts." Not this time. He also said, "You know she'll never admit it if you ask her" & "I guess this explains the way your Father has always treated you compared to your sister."

10/26/2011 11:42 AM
Posts: 162

Perhaps this is a stupid question, Dina...but didn't you Herx on therapies? If so, why? You don't have Lyme, but you do have HHV (is that part of MEN1). what test was the defining moment connected to?

How are you doing? Are you angry, sad, slightly relieved? I read some of the link, but need to look further into this. What doctor best treats MEN1? How is your son?

Hang on to any hope right now, dear!



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